Attitudes, decision-making processes, and preferences regarding preconception carrier screening among Hutterites in Manitoba

Abstract

In response to the increased prevalence of certain autosomal recessive conditions in the Hutterite population, a targeted carrier screening panel is under development at the Health Sciences Centre in Winnipeg, MB. Research on the implementation of other population-based carrier screening tests has shown that to be viewed as acceptable and valuable by the community offered screening, the test itself as well as related education and genetic counselling should be tailored. Tailoring requires an understanding of the perspectives of the target population regarding the benefits, risks, and utility of screening as well as their cultural practices and beliefs that might influence those perspectives. Little is known about the attitudes of Hutterites toward comprehensive carrier screening, how they would use the results, or what their preferences would be regarding provision of such a test. This cross-sectional exploratory study used a convergent mixed methods design to answer these questions, consisting of a chart review, survey, and semi-structured interviews. Surveys were completed by 95 Hutterites and 13 of these also participated in an interview.

Results showed that there is considerable support for carrier screening among Manitoban Hutterites but the sentiment is not universal. Many feel that carrier screening has the potential to be helpful to families and communities, but that it may also lead to an unintended loss of social cohesion through an increase in stigma or changes to cultural practices. Individuals need to consider both individual and community factors when making decisions related to carrier screening. Most respondents who expressed interest in carrier screening would alter their family planning after receiving a high-risk result, but an individual’s life stage and life experiences modified this pattern. The results of this study illustrate that the provision of carrier screening can be tailored to the Hutterite community in many ways including at an organizational, educational, and counselling level. Successful implementation of the recommendations provided will help to ensure Hutterites in Manitoba have access to tailored and culturally sensitive care.